I have an uncle who I had to place in a nursing home a couple of months ago. He is 84 and lived on the farm all of his life, a bachelor. I farmed with him and took care of him. Over that past few years, he had a couple of episodes where he would drive to town, and get a couple of beers and supper, then being late at night, he'd get confused. He was able to drive just fine but couldn't mentally put it together on which road/turn to take to get back home. This led to me limiting his driving last fall, especially as winter set in as it gets dark so early. The other "problem" was he was a night owl so he'd many times sleep in late and not get active until late afternoon. So by the time he wanted to get going, it was close to dark already.

He never had TV but we put that in over the winter and got a nice 32" screen for him...that was a mistake. First off, he's not a technology guy and couldn't figure out the remotes and secondly, at times the TV would confuse him. It almost appeared to be a "window" with people to talk to as opposed to just a TV screen (so a news program with people debating and he'd want to get in on the debate). I put it on a power control to insure it would only turn on when I wanted it too so as to not confuse him.

Life was good for the most part with him helping out and working around the shop. I'd come down everyday to check on him and verify what he had to eat and drink, and make him a nice meal for supper - I was looking for added help as I knew there would be times I needed someone to check on him and furthermore I was concerned going into this upcoming winter, but services are very limited in rural areas.

Then this summer, he went out barefoot to "take a leak" and stepped on a mowed twig, fell to the ground, and fractured his pelvis. After a weekend in the hospital, I had no choice but to find a nursing home for him to rehab in and he went down hill fast. At first I assumed it was partially the medication and I knew his was miserable there. He had an issue of needing to go to the bathroom quite regularly and in his current condition he couldn't get up and walk. So that meant early on a lot of calls about him falling - he fell in the hospital getting up out of the recliner and then at the home while in the wheel chair (and of course you cannot put a safety belt on them as that is considered restraint, but I guess waiting to hear the alarms and picking them up off the floor is ok - sorry side note).

So this all lead to a nasty urinary tract infection. I found out only recently how devastating that can be to a mind. In the home, he was put into the "special needs room" or dementia room as they had full time nursing who could watch him more closely. This made sense at the time but as I told Dad, I'd go crazy in there and my uncle did become almost completely unresponsive. I told the staff many times how they never met the man as he just sit in the wheel chair with his head down (like chin on your chest).

I had several go arounds with the doctors over the UTI. A nurse first called requesting I take my uncle to see the doctor and press for more information, as she too was concerned there was more going on. He'd been there maybe once before but I was told I didn't need to be there (I'm in a different town). I took him in that day and got him with another doctor. I asked about getting a CAT scan of the head to see if there was strokes and then I found out he had one done the weekend in the hospital after the accident. (back then he had an issue of squinting really hard with both eyes like there was something in them. I gave him a wash cloth at first and it seemed to help but when I saw that again, I mentioned it to the nursing staff so I assume that led to the cat scan). It was clean. He had developed a hernia but was told if it wasn't an issue not to do anything about it and further in his condition, surgery would not be good. Beyond that, a) the pain of coming back from the hip could be months, b) something like a 50% mortality rate with 6 months on a fracture, and c) BIG issue is the UTI.....

My Uncle was just coming off a regime of antibiotics and we were going to wait until the following Monday (labor day) and do a followup, then go from there. Well come to find out later the next week that the follow up did not occur. As it was related to me when my "assumption" wasn't confirmed, my Uncle never sat on a commode that allowed for a sample. Multiple requests to the doctor for an order to catheter and sample were not approved and finally the doc said "don't worry about it". Well that led to a Saturday morning chewing on a different doc in the office who said he'd review things. Later that day the home confirmed a new set of orders including a catheter to check on the UTI plus they pulled a medication to see if that was part of the mental issue. My "conversations" at this point with my uncle were at best, maybe a type of answer to a very simple question and many times you couldn't wake him. Come Monday it was confirmed he still had the UTI and a new antibiotic was ordered.

By the weekend, he completely unresponsive and the feeling quite literally is I need to stop calling a doctor and call the funeral home. I do some consulting work at a doctors office and visited with two nurses who had mothers in homes in this same town. I got a phone number of a new doctor and had a lengthy discussion with her. She agreed to see him and we started over. CAT scans were clear other than he has an enlarged prostate which could further make clearing up the UTI a problem. Some UN-returned phone calls led to a discussion with the new doc on a Monday. That weekend they put in an IV for fluids, a catheter to flush him and on Monday the nurse said she had an order to pull it. I suggested maybe we leave it in for various reasons, Doc concurred but mentioned they had to press to get the home to put it in as they were concerned he'd yank them out. My point was let's worry about that if and when if does it. Then I basically asked if there would be a reason to move him out of that home. Obviously there can be negatives of a new surrounding, new staff....the feeling I got was that ya maybe there would be some advantages - obviously people are careful of what they say.

I then called the other home, set up a meeting the next day, they had a room, I reserved it....but the big thing that came out was a question: Have you considered putting him back in the hospital. So obvious yet smart. We got him put back in to once and for all hit the UTI. The previous Sunday Dad even say my Uncle in bed sleeping with his head up like he was in the wheelchair (down) so it was like he couldn't put his head down. The doc then stated one time how stiff my Uncle was "almost like Parkinson".....that reminded me of an article Dad had on LBD....I researched it some more, on this site.....and gave the material to the doc the next day. She said she had considered that and she had started him on a drug (sounds like Cinnamon) for muscle stiffness in Parkinson.

That night in the hospital was almost like getting my Uncle back. He was in the recliner and holding his head up more. We "chatted" and he laughed at times. I fed him some food and was hopeful we had made a turn. Now he's in the new home and still not eating much and sleeps a lot. The only real improvement is he isn't as stiff. He is currently on two meds for the prostate and urine flow, that Cinnamon for Parkinson, and an antibiotic for UTI. They were going to pull the catheter last night. He chats only a little, and has been on the floor a few times already like before.

I apologize for the long email. Any thoughts? I was told a urologist may not be helpful at this point as the drugs can be hit and miss. Doc is aware of some drugs making it worse. Our motto for a while now has been to find what can be fixed and to keep him comfortable. Does it sound like LBD...my main reason for being upset is how long that damn UTI went on. I bet he had it for 2 months so maybe there's been a lot of mental damage - I don't know.

In closing, I'm just wanting to exhaust my resources on trying to help him at least to a point where he can enjoy the remaining years. He can get up, at one point walked 200 feet, and is very strong. But he's lost a lot of weight and is in an environment that still works on a different schedule than his body (not unusual for him to be up until 3am and eating around 10-11 pm).

Take care and thanks for any help.

Mon Oct 21, 2013 11:42 am

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Uncle placed in a nursing home.

Hi and welcome. Well, you certainly have been through a lot recently with your uncle, and he is lucky to have you overseeing his care. LBD can only "really" be diagnosed after death and with an autopsy. In the meantime, working with health care professionals who know a lot about the various types of demetia and how to try to treat the symptoms, is the best way to help him out. He should probably have a full neuro workup with people who know what they are doing. See if you can find the best drs. in your uncle's area.

My dad never really had a full blown workup because he deteriorated so rapidly, that it became extremely cost prohibitive to try to move him the 2 hour each way, plus his ability to travel was so compromised, that I never was able to get a "real" diagnosis. So, his symptoms were treated without his having been shipped to a neuro. in the Balt/Wash. area to get a diagnosis. Frankly, if he really did have LBD, and most of his symptoms appeared to be rather classic LBD, there really wasn't anything that would have helped him, as this disease is progressive and eventually fatal.

Many CGs on here have written about their LOs and UTIs. The delusions, etc. seem to get worse with infections, and UTIs are very common in the elderly. It may be that your uncle will see a lessening of his symptoms as his infection clears, but if he does have LBD, there will be a progression to the disease, and it is very likely that it will be roller-coaster-like. One minute, day, hour he may be very lucid thought-wise and speech-wise, and then suddenly may only be able to whisper, thoughts are delusional, words may fail him, he may become almost paralyzed, incontinent, etc. Then he may regain some of his abilities and cognitions for a short time.

I'd recommend reading as much here as possible, and do a search on books about LBD on here - there are several newer books that people have found helpful. Good luck and keep us posted. It is a tough road and your uncle is lucky to have you helping him. Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Mon Oct 21, 2013 2:38 pm

gailabbi

Joined: Sat May 25, 2013 3:53 pmPosts: 330

Re: Uncle placed in a nursing home.

Welcome to the Forum! Your Uncle definitely is lucky to have you advocating for him and it sounds like you've been working hard at it! My mother had UTI's a number of different times over the years and it always made the LBD symptoms worse. It became something I could recognize. The LBD itself took a couple of years until we finally talked to a geriatric neurologist who identified the LBD. Then when I read up on LBD I knew he'd found the diagnosis. Hopefully, as Lynn, says you can find an experienced neurologist! Good luck.

_________________Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

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